Conflicted on taking medication

Hello I had a question on what your taking for your hands Seems like Tamoxifen causes fluid retention I have osteoarthritis in my hands I believe Tamoxifen increased the pain I have
I sleep on gloves and do exercises for hands so painful not just stiff
Thank you for any info

Was taking Tamoxifen 20mg to start then 10 mg Took it for 3 months I had extreme fatigue, hot flashes 7-8 at night Frequent urination 7-8 times a night
I stopped for 3 months took 3 months to start feeling better had a lot of swelling in my feet and legs Never had that before
I know a lot of women take it without all these issues
I started Tamoxifen 5 mg this week Doesn’t come in 10mg so cut them in half I’m taking them in the morning Some hot flashes but so far not as frequent I have had trouble sleeping which I normally sleep pretty could before taking this drug
Saw surgeon today not going to see radiology going to see how I do on lower dose and a mammogram in 6 months
See what works for you and communicate with your oncologist
Wishing you the best and less anxiety about this drug What surgeon told me is your body takes sometimes 6 months and side effects can lessen
And some women just say they feel a little warm at night
Hope this helps a little🙏

My hands swelled about a year ago. Had mris of wrist and hands. Painful but neg Ana and rheumatoid arthritis. Dr. Said sometimes does not show in blood. Took prednesone at first and plquenil. Pain went away. Still have bumps on top of hands. Got off prednesone and just take methetrexate folic acid and plquenil. No pain and no swelling of hands. I am going to have a few drops of cortisone put in top of hand bumps away from tendons. Doc said it will reduce bumps. The breast cancer thru me for a loop. I just am dealing with seroma under left arm. I just have to have it aspirated no. 8 on Friday. It less and less cc's every time. My breast surgeon offered surgery under arm and drain. I said no. The aspiration and compression is less invasive. I can tolerate til seroma heals. I would like to know if anyone else had a seroma and what they did to get rid of? I have had for a month since lymph node biopsy (neg) aspirating 62 first time. 7th time 9cc. 8th time Ccs on Friday.? Hopefully 5 ccs. Ultra sound shows it is healing. Good luck to me.

Anyone have seroma after lymph node biopsy(neg) for breast cancer.? My cancer out of breast and my doc thinks not coming back. Hopefully that is true. I just am being followed in future with mris. Good luck to me.

Thank you for the response. It helps to hear other people’s experiences. I hope taking the low does will make it bearable for you!
I am going to ask my oncologist the how likely the cancer is to return when taking tamoxifen vs. not taking it.
I really don’t want to have to take it but maybe I will ask about trying 5mg and see how that goes.
Thanks again and take care!

I had ER+ PR+ HER2- with BRCA2 mutation. Also have CHEK2 mutation but we didn’t know that when the original treatment decision was made. Had stage 1 BC 7mm. Ki-67 17%. Double mastectomy and ovaries removed. No chemo or radiation recommended. My oncologist advised me not to take tamoxifen because I had a less than 1% chance of recurrence either way. I took his advice.

Seven years later a very aggressive Ki-67 50% BC recurrence in my chest wall and pectoral muscle. My new oncology team disagrees with the original assessment but hindsight is 20/20. I’m on an AI now plus had surgery, radiation and take Kisqali as well. 3 years into round 2. Will always be on treatment now, but so far so good.

If I had it to do over again I would take the Tamoxifen but the truth is we’ll never know if that would have changed the outcome. Like everyone says it’s all a personal decision. It’s also not an exact science. Best of luck to all.

Stage 1 / Grade 1 BC has very good results after mastectomy. Happy for you.

IDC ( 1.9mm) and DCIS(4cm), took 3 lymph nodes all negative.Estrogen and Progesterone positive HER2 neg. Grade 1. Lumpectomy and reconstructive surgery on both(4-4-23). 15 days radiation. Took me over a month for my skin to heal from radiation .No Onco test cancer was too small. Post menopause.
Took anastrazole for about 2 month- literally put me and my body in a tail spin. Side effects didn’t start until about a month maybe a tad longer. Went off with doctors approval. Currently on exemestane about a month now, no side effects as of now. I journal everyday- tracking anything. I have also been very consistent with yoga, walking and currently seeing a PT and lymphedema specialist and eating more healthy. I do have a little fatigue, but try to work through it. I also have available to me: acupuncture, oncology massages,health psychology. I feel the hormone blocker is the right choice for me.

Good for you!

Thanks. They said I was Stage 0 and Grade 3.